Last night I posted a joke about having strangers help me pick boogers in public, as I’ve lost the physical ability to reach my own nose over the last few months.
This morning, I have an itch on the bridge of my nose, right between my eyes. It’s the kind of dry, peeling skin, sunburn itch that…
I remember when I lost the ability to feed myself. I have SMA Type 2 and I’m turning 44 this year. By the way, I have been exactly where you are now, looking forward through time to try to guess what you’re going to lose and when. The biggie for me was typing & video games. Lost that around age 30. Age 34, writing, even my signature. Very close to the day I finally gave up struggling to get the fork up to my mouth using a complicated 2-arm support system move. The first meal out about in a restaurant being fed by my mom was a very low point.
My breathing has completely surprised me. I was very sickly in my teens & 20s with lots of pneumonia, and I totally expected to not make it past 29. Always feared that day I would need a ventilator, which I always swore I would refuse. I have depressed nighttime breathing, but I’ve always felt that if I allow my lungs to rest at nighttime with a BiPAP machine, it would only be a matter of years before needing ventilation full-time. I’m 43, still no nighttime ventilation, and no ventilator. I only get sick once or twice every couple years, and though some of those were close to taking me out, I have won every battle.
Bottom line: we can’t predict the future. Enjoy the abilities you have left to the fullest, and struggle every day to keep using those muscles that still function to remind them you still need them. Oh, and I have also learned that you can get any itch to take care of itself within 5-10 minutes. Try telling that to someone who can scratch their balls the next time they look uncomfortable :-)
Reblogging this bc your ask isn’t turned on and I feel a deep desire to just thank you for sharing this with me. It truly made my day, and I suspect, will alter how I look at my future. Thank you so much.